I’ve mentioned before how surprising it has been to find myself feeling blessed and fortunate for going through an experience like I am. But there’s no denying that it’s true. And yesterday was just another example of this. I received a gift yesterday that is, without question, the most moving and touching gift that I have ever received. And it’s a gift I would not have been given were it not for my tumor.
Over the last couple of months, my family and friends Derek Briggs and Gina Winkler have collaborated on what you see in the picture attached to this post. They took the MRI scan from when I was diagnosed and turned it into a version filled with words provided by Julie and the kids. The words are a mix of memories of our life together and spiritual/inspirational passages. It’s the things they want me thinking about while I undergo my radiation and chemo treatments. This took a tremendous amount of time and effort to put together and there’s no way I can really ever thank them enough.
There are several things about this that I love:
- The people who created this are among the most precious to me. It’s an expression of love that only reinforces how I feel about them.
- Every one of us will go through struggles in life. And yet, personal growth comes from understanding how you can take those challenges and find the good in them. I can think of no better expressiong of turning a negative into a positive than this artwork.
- It’s reminded me of things I had not thought of in a long time. In the hustle and bustle of the day to day, it’s so easy to get distracted away from what really matters. These words help remind me to be aware of the long arc of life and how wonderful that gift of life is.
So once again, thank you tremendously Julie, Matthew, Cassady, Derek and Gina. I’ll never be able to say thank you enough, but I hope I can return the love you’ve shown me and live up to this most amazing of gifts.
It’s been awhile since I shared a status update on things. Here’s the latest.
After meeting with the Robert Cavaliere of The James Cancer Hospital at Ohio State, he laid out a few different things to consider:
- At 47, I’m a bit older than the median age for people who get gliomas. The older you are, the worse your prognosis and the more aggressive you typically want to be with treatment.
- My tumor has certain genetic markers (1p/19q deletion and IDH positive) that research has shown make treatment more effective.
- Even though my tumor is considered a grade 2 tumor, there’s more of a spectrum to tumor severity than the discrete grades of 1, 2, 3, and 4 implies. Gliomas can (and frequently do) increase in grade over time. And there were things in the pathology for mine that indicated it was early in the process of trying to move from a 2 to a 3.
- If we chose to do nothing but observation, I would very likely be looking at my tumor recurring sooner rather than later. Recent research suggests that this would portend lower overall survivability. While that may seem obvious, it has not always been so clear.
- Other recent research makes it pretty clear that early treatments including both chemotherapy and radiation have better results than radiation only approaches. There has been little research done yet on chemotherapy only as an early treatment approach.
Given all of that, he said we had three rational choices that he could support.
- We could wait until the tumor recurred and then move into a chemo/radiation treatment at that time.
- We could get aggressive now and start right away with both chemotherapy and radiation.
- We could get aggressive and try “the road less traveled” and do chemotherapy only, saving radiation for when the tumor recurs.
I’m someone who’s much more comfortable being proactive than waiting, so that ruled out the first. Given that there was more research with the second than the third, that’s what I have chosen.
This morning, I had a planning visit with the radiation oncologist. I got another MRI done and was fitted for a mask that I’ll wear during the treatments. The mask’s job is to keep me absolutely still during the radiation treatment. I had to lie still for 30 minutes today while the mask dried. It was pretty difficult, but I now have options for what to wear at Halloween.
My radiation treatments will begin on or about July 21. I’ll have them 5 days a week for six weeks. Each treatment will be relatively short – less than a half hour appointment of which the radiation zapping itself is only a couple minutes total.
At the same time, I’m going to start a course of chemotherapy. This involves taking a Temodar pill along with anti-nausea and antibiotic pills in the evening. It will be an everyday thing during the course of the radiation treatment. After that, I get a month break and then move into a mode where I go through 6-12 monthly cycles of 5 days on, 23 days off with the Temodar.
My understanding is that most people tolerate both the radiation treatments and the chemo pretty well. I’m not expecting to have my work affected beyond the simple fact that I won’t be able to travel for at least six weeks while doing radiation.
I still feel very fortunate for how well things have gone so far. Love and prayers from all of you are no doubt a big part of why that’s been so. Thanks so much for your continued thoughts.
I’ve been feeling remarkably well all things considering. Just over a week from surgery, the biggest effects I’m recovering from are:
- I still have stitches in my head, though I’m expecting those to come out in the next few days.
- I have to take 4mg of Dexamathasone every six hours. That’s a steroid (the NFL would ban me) that’s been really hard on me. It’s raised my blood pressure, given my insomnia and made me feel anxious at times, has started to affect my appetite in unattractive ways, and is starting to throw in some acne just for fun. Can’t wait to get off this stuff.
- My right leg strength, flexibility, and mobility are all pretty good. And the sensation in that leg is improving though still affected. I had the first of what will likely be only three physical therapy sessions on Friday where the therapist assessed me and gave me a bunch of exercises to do to help reestablish my sense of proprioception (awareness in space) of my leg and foot.
After the PT Friday, I got a chance to visit work again for the first time. It was terrific getting to see so many friends again. I truly enjoy working at Neo Columbus and am looking forward to getting back to full time. The initial guidance from the surgeon was to tell them I’d be out 4-6 weeks. Well, I’m actually already diving back in, though mostly from home for a bit and not yet full time.
My surgery on May 8 went well, spending just under about 80 minutes total in the operating room. I don’t remember much of that as the anesthesiologist went to work quickly. I woke up in the recovery room and spent a couple hours there before being transferred to the Neuro Critical Care unit where I was soon reunited with Julie and my sister Deb.
Somewhat surprisingly, it wasn’t the craniotomy itself that was the most uncomfortable – it was the after-effects of having been intubated. My throat was very sore and I had to master ice chips before graduating to jello. I also had these cool wraps for my lower legs that had air bladders to inflate and deflate over time to simulate circulation. I could feel it happening on my left leg, but not my right leg. This was really the first sign of something we expected – much of the sensation below my knee in my right leg is now gone. Maybe it will come back over time. We’ll see. Fortunately, I have reasonable strength and flexibility in the leg.
Late in the afternoon on Thursday, we were thrown for an emotional loop. We were visited in the room by Dr. Mohammed Hamza – a Neuro Oncologist. His specialty deals with chemo-therapy treatments for cancer patients. He asked if we had seen the MRI that had been taken just prior to my surgery. We had not, so he brought it up for us. In the process of showing it to us, he highlighted enhancements in the imagery that were revealed. He indicated that this was suggestive of a higher grade tumor, possibly even a grade 4, instead of the lower grade tumor we had come to expect. At least, I think that’s what he told us, because both Julie and I found it difficult to concentrate on actual words after hearing from him that he thought it might be high grade. He emphasized that we needed to wait to see the final pathology, but it was difficult to hear him and not start thinking of the worst.
The next morning, the hospitalist’s assistant - a nurse practioner – was one of the first to visit us. She was in a no-win position. She had seen his initial notes, but had neither the experience he had nor the pathology we were waiting for to give us any of the answers we wanted. It was very stressful. She was quickly joined by Dr. Praveen Dubey who is a radiation oncologist. His role would be in providing radiation treatments for me as part of an ongoing treatment plan. He had the experience to answer our questions. And we had had enough time to formulate a bunch of them since first seeing Dr. Hamza. Still, the overwhelming feeling coming out of our conversation with him was to prepare for the worst. We started telling a few close friends, but didn’t want to worry the kids until we had a more complete picture. That was a difficult decision.
Also on Friday was my first attempt at getting out of bed. The physical therapist walked with me up and down the hall. I did better than I expected given that I couldn’t feel the lower half of my right leg very well. But I managed to walk a few hundred steps and not stumble in any significant way.
Later that day, the I was transferred out of Neuro Critical Care and into a step-down room in the Brain and Stroke unit of Riverside Hospital. That meant I got a roommate (Dave) and less regular unprompted evaluation (down to once every 4-6 hours instead of once per hour). By Saturday morning, they concluded I was doing great and ready to head home to wait for the pathology results.
Yesterday was Mother’s Day and I managed to get around pretty well. I put in over 4000 steps for the day and even managed to do the dishes and cook a pot roast. Julie and Deb weren’t entirely comfortable with my level of activity all the time, but I was happy to be up and moving.
Today, right about noon, we got a call with the pathology results. And after almost two days of feeling resigned to being told it was high grade, Dr. Hamza’s office called to tell us that it was a grade 2 oligo-astrocytoma. That’s a low grade “mixed” glioma of astrocyte and oligodendrocyte cells. We still have much research to do on this, but this is unquestionably good news compared to what I had been expecting after the first visit with Dr. Hamza.
There are many next steps to come. These include scheduling physical therapy so I can get better control over my movement. It includes follow-up appointments to get my sutures out of my head and meetings with Dr. Hamza, Dr. Dubey, and Dr. Robert Caveliere of the OSU James Cancer Center (2nd opinion) to better understand what my treatment plan is like. I may still end up with some combination of chemotherapy and radiation therapy, but at this point, I don’t think we’ll know until the end of the month.
For now, the short term plan is getting enough rest to properly heal while slowly incorporating other activities to get me back to as normal as I can. The original prognosis called for me to be out of work for 4-6 weeks. Given how good I feel already, on day 4, it’s hard to see how I won’t be back at least part time sooner than that. But I’m not going to jeopardize my health and rush back.
Finally – I want to thank all of you again for the love and support you’ve provided over the last days and weeks. It has been so overwhelming. Julie and I had many visitors in the hospital. My sister flew in from California to help out. I’ve gotten so many cards, letters, and prayers from people – many I don’t even know and from states far afield. Prayer really does help and I have been the beneficiary of it. Even if you are not a spiritual person or a follower of Christ like I, please do know that you all have acted in a Christ-like manner to us. The warmth of your embrace and your positive thoughts, prayerful or otherwise, is appreciated more than you can possibly know.
We’re in the home stretch leading up to my surgery now. Much of the time, it still feels not quite real. I’m still mostly asymptomatic, and yet I’m about to let some guy open my skull with a drill and cutting tool (“like they do a jack-o-lantern” as my friend puts it) and get to work cutting the bad stuff out – or at least as much as is possible without doing too much other damage. And yet just three days ago I ran 13.1 miles. Is this really about to happen?
Julie has put a sign on our bedroom door. It’s a line from one of her favorite country songs and she uses it to count up our time together since that initial seizure. It makes me happy to see it and is one of many ways that people have shown their feelings for me. I especially like that she’s left room for so many tick marks. I truly have been so blessed along the way by your warmth and compassion. I’ve received dozens of cards and way too many people to count telling me that they’re praying for me. I feel them and thank you. Whether it was driving me to/from work or arranging a surprise Skyline Chili lunch that included current and former colleagues at work, my friends and family have made me the beneficiary of more love and kindness than anyone really deserves.
I particularly want to call attention to those who have provided support and love to my family. This whole thing is more difficult on them than it is on me – not because I am special or unique. I believe this is true all of the time. The family is burdened – emotionally, physically, logistically – just as much, if not more, than me. And yet it’s me who gets the lion’s share of the direct support. So, for those of you who have expressed kindness and said a prayer for them, know that I am even more grateful for that as I am for what you’ve done directly for me.
The 13.1 mile run I referred to earlier was the Cap City Classic here in Columbus. It was the culmination of a “Run for God” ministry that our church participates in. As you might expect, it’s a combined physical and spiritual journey that helps you get closer to God and I highly recommend it (particularly if the class is led by my friend Ben Reed). At the start of the class, we were asked to pick a word to focus on for the duration of the class. My word was “humility”. It’s been unreal how strong a role that word would come to play in my life since January.
It began with a run where I spent time thinking of how runners demonstrate humility in celebrating personal records, even for folks in the back of the pack. Runners are also forced to make themselves aware of their own limits lest they risk injury. These initial thoughts carried through to conversations I had with colleagues around town who had agreed to let me talk to them about what separated good consultants from poor ones. The message was consistent. The best consultants were those who showed up ready to learn from their clients before arrogantly suggesting solutions.
I gave a talk on humility at the Columbus Ruby Brigade. It wasn’t really good and I felt humbled by my lack of preparation. And then a few days after that, Jim Weirich passed away. Jim was one of the people in my life who best demonstrated what true humility was. I was forced to reassess my understanding of the word. The joy, openness and approachability Jim showed to everyone dramatically changed how I came to understand it.
And now I find myself in a situation where my understanding shifts yet again. Yes, humility is not thinking too highly of oneself. And yes it’s making everyone you come into contact with feel special. But it’s also about making yourself vulnerable and recognizing your dependence on the help and service of God and others.
I am the first born son of a first born son – for seven generations. My mom told me that more times than I could possibly count as I grew. Whether it was her intention or not, the message in my mind was clear. Be proud of who you are and be an independent and responsible person. Up to a point, it’s hard to find fault with that. It’s very much made me into the kind of person I am. But it’s not really a message of humility. To be truly humble requires you to embrace your dependence on others.
By far, the biggest adjustment for me in the last 6+ weeks has been this forced dependence. It’s frequently uncomfortable and not very natural to me. But it has been a gift. I never would have considered a brain tumor a blessing. But the things I’ve learned by going through this process have helped me to understand that I’m a better person, and closer to what God wants of me, when I attempt to be truly humble, in all subtleties of the word. I’m not sure it’s possible to be completely successful, but I know I have to keep trying.
And so it is that I now think about what’s about to happen in the coming days and weeks. I can’t help but again reflect on the love I’ve received and the wisdom I’ve gained. And I will very soon be stripped bare of any semblance of independence – at least for awhile. Humility is coming whether I want it or not.
The prayers you all say for me and my family warm my heart. My prayers are for discernment of God’s purpose in my life and for peace of mind, love, and support for my family and friends.
God bless you all and thanks again for everything you’ve done up to now and everything you continue to do.
I got to meet with Dr. Robert Gewirtz this morning to plot next steps. His recommendation mirrors the same feeling that Julie and I have had since the start – let’s get this thing out of there. And so I’m going to be heading in for a full resection in a few weeks. Here are a few things that people have asked about:
What are the possible drawbacks? You know when you want to tell someone that something isn’t difficult you say “it ain’t brain surgery”. This is apparently difficult. Fortunately, the surgeon I have is skilled. Still, he was clear in making sure we understood that there are risks – some of which are very bad indeed. But the most likely outcome at this point is that I’ll lose some motion and sensory capacity in my right leg. The tumor is right on the part of the motor/sensory strip that controls that. So, I’ll probably have physical therapy to go through, could require some form of assistance (e.g. cane, boot, brace) to help me walk, and am likely to lose some amount of sensation in the leg.
Am I going to be on chemo/radiation? What is my life expectancy? What type of tumor is this? These and bunches of other questions are really not knowable at this point. Once they get the tumor out, they’ll be able to do pathology on it to better understand what’s going on, how truly active it is, and what the appropriate long term treatment and prognosis is. He still feels comfortable predicting that it’s a low-grade glioma, but more details about the severity of it beyond that still remain to be seen. So, stay tuned.
How long am I going to be in the hospital and how long am I out of work? At least 2 days in the hospital, but the actual length depends on how I do in recovery. I’m likely going to be out of work for 4-6 weeks, but that too is only a rough estimate at this point. I fully expect to put a serious dent in my Netflix queue, but I know I’ll be itching to get back as soon as possible.
Will I be awake for the surgery? No. He’s participated in procedures where this was the case, but he says they have better methods for this now.
I’m experiencing occasional instances of my right leg going numb for 15-90 seconds. Maybe two days per week, 1-2 times per day. Are those seizures? Probably - though apparently only mild ones. Good to know.
I feel amazingly fortunate for all the love and support you all have sent my way. It’s hard to think you’d count yourself lucky after learning that you have a brain tumor, but I have been truly blessed the last two weeks. None of us knows ahead of time the path our lives will travel, the ways in which God will call on us to bear witness and support us when the struggle grows difficult. But I most certainly am gaining an appreciation for that now. That support has come through all of you. Even if you weren’t aware of it, those of you who have been sympathetic, sent a card, or offered me a ride to/from work have been the hands and feet of God. Thank you all.
Several folks have asked for an update on my health. Some of this will be repetitive to some of you, but I wanted to document the whole story anyway.
Last Saturday evening, Matthew was in New York on a high school band trip. Julie and Cassady had just left the day before on a confirmation trip and were in Atlanta on their way to St. Simons Island. I was working at home with a friend (Ben Reed) on two iMovie projects (1, 2) when all of a sudden my right leg started to feel some strange combination of numb and clumsy. I knew pretty much right away that this wasn’t a case of my foot being asleep so I had my friend take me to a local trauma center. At the trauma center, they gave me a CAT scan and an Xray. The CAT scan showed something that might have either been a stroke or a tumor so I was transferred in an ambulance (full speed, lights and sirens on) to Riverside Hospital about 10 miles away.